Monday, July 28, 2008

My friend Brian just posted some pictures of the marrow typing kit that you send off with your cheek swab sample. I hadn't seen one yet. Looks even simpler than I imagined. Here's how to get your own kit.

Brian: "So easy to do - just rub these swabs on the inside of your cheek, and send them off."

Brian: "Not just an awesome metal band, biohazard is everywhere. Is that ok to send in the USPS?"

Brian: "They even pick up the tab for the postage. Stay classy, marrow.org."

The 2nd round of chemo is going smoothly so far. Just like with the first round, I'm starting to notice the side-effects on the 4th day (today). Yesterday I still felt great with just a little bit of fatigue and food tasting strangely, but today's it's really kicked in. My face and hands feel swollen, food tastes really weird, and I'm tired and cranky.

We've scheduled the chemo appointments to be in the morning which is great since it lets us get them out of the way and on with the day.

My parents are all settled in to their new apartment! They are masters at moving from having lived in the military. I bet this is probably the 25th or 30th house they've lived in throughout their life, so they know just what to bring. They came into town the Thursday before last, started looking on Friday, and had a great place rented and almost fully furnished by the following Monday. And it's only a mile from here and in the same neighborhood, which is great.

The Naturopathic Oncologist we saw last week (something I haven't blogged about yet), recommended walking every day to help keep the fluids going and all the hormones and internal systems in check, and my dad has been showing up every morning, "like a bad dream", he says, to take us out for a 2-3 mile walk. It's great advice, since even after I was initially diagnosed, it was the one thing that cleared my head and made me feel less depressed. There's nothing like physical exertion to keep your spirits up. After walking we come back for coffee and read the paper. Sometimes the simple things in life are the most rewarding.

Our schedule today looked like this:

wake up at 6:55am

meet dad at 7:00am

walk from 7:00am to 8:00am

have breakfast and coffee

chemotherapy appointment from 9:00am to 10:00am

blood draw appointment (and wait for results) from 10:00am to 11:30am

shuttle parents back home from 11:30am until 12:00pm

head off to work from 12:30pm to 6:00pm

sleep from 6:00pm until 8:00pm

eat dinner

play on computer, read email

bedtime by 11:00pm

Now that I'm back on the meds for the chemotherapy (and other recommendations from the naturopath), I'm taking meds about 7 times a day. I have a fancy pill box to keep track of it all :)

Thursday, July 24, 2008

The results are in, and they found three potential 6/6 matched donors and also a fully-typed 9/10 matched donor. This sounds totally great, but read on. The devil is in the details.

What this means is that there are three people who match 6 of the 10 antigens based on their preliminary typing (most registries only type donors for 6 antigens) and one person who has already been fully-typed who matches 9 of the 10 antigens. A 10/10 donor is ideal, but a 9/10 donor can sometimes work just as well.

So several things are possible at this point:

the donors can't be reached because they moved and didn't update the registry

they're no longer eligible because of age or they end up failing the physical exam required for being a donor

they turn down the request

the three partial matches don't match well once they are fully typed. For example, it's possible that they end up matching only 6 of the 10 antigens or any number between 6/10 and 10/10.

The other sort of amazing, and at the same time somewhat sobering, thing to realize is that these are the results of searching the *entire* worldwide database of (10 million) users. So unless a new hit comes up between now and the transplant (they check everyday), these 4 people are the only potential donors we're dealing with. It's a little scary to think about. We're sort of freaked out.

If we don't find a match there are other, more exotic, types of transplants available such as cord blood transplants that don't need to be so closely typed. The downside is that the hospital stay can be longer and there are increased risks. But it's an option.

If it's surprising that there are only 4 results, it was surprising to me too. I expected either thousands or zero. The chance of just 4 seems awfully low. I asked about this and the search coordinator said “your HLA typing isn't what's normally seen in the donor pool of approximately 10 million donors worldwide.” But she was quick to point out that at least we *had* results.

Also, I don't have the contact info of any of the donors and I'm not sure what their policy is about that. I do know that there are transplant recipients who have kept in contact with their donors after the transplant, but it may be that contact is only possible once the donor is agreed upon. I'll check more on this, since I'd personally want to enlist the help of everyone I know to help track down potential donors in case they moved and the transplant center couldn't find them!

So while the results aren't great, at least there are *some* results. So please cross your fingers, pray, do a tribal rain dance or whatever it is you do to see if we can get all the stars to align just right for this.

Tuesday, July 22, 2008

It's been a while since I've posted, mainly because I'm feeling great and there hasn't been a lot of status to report. Also I've been busy at work for the last week and a half, working at the office full-time.

Here's a quick update on what's been happening:

Since the platelet transfusion the counts jumped up to 48 and have been steadily dropping since, which is expected since the lifetime of platelets is only a week or so, but they're hanging in there for the most part. On Monday after the transfusion the counts were at 48, Wednesday - 40, Friday - 28 and last Monday - 22. If they drop below 10 again we'll need to do another transfusion so I'm hoping they'll hover somewhere above that for a while.

Tomorrow we have a consultation with a naturopathic oncologist. I'm looking forward to this, since I think we're pretty well covered in the area of medicine and treatments but Johanna and I feel like there is a big gap with everything else we should be doing, like what kinds of food I should be eating, what types of excercise and activity we should be doing, and in general what kinds of natural things can we do that might help. For example, I read recently that eating pineapple can help stimulate the growth of platelets, and is the only food known to do so. Apart from a clinical trial there is also no known drug that can stimulate the growth of platelets which is why they're particularly hard to manage. What's interesting is that several months ago (before I was diagnosed), I rediscovered pineapple and fell in love with it, and raved about it to my friends. So maybe it's not a coincidence and my body was trying to tell me something. Anyway, the oncologist we're seeing has spent the last 10 years specializing in naturopathic cancer care and is familiar with MDS so it should be interesting to hear what he recommends. For more info, click here and read about Mark Gignac.

Thursday I go in for another CBC (complete blood count) test. Last week I got poked 4 times (Mon, Tue, Wed, Fri), 3 times for routine CBC checks, and once for more HLA typing for the donor search. When I go in for blood work I call it my "red shirt day", since I wear red shirts on that day to let my friends and coworkers know I'll be out for a little bit giving blood. Yesterday I had to wear one of Johanna's red shirts since I'd run out!

Friday we start another round of chemotherapy, this one lasting 5 days. I know what to expect this time and how to manage some of the side-effects, so it shouldn't be too bad. Though I still have the bruises on my belly from last time (the injections are subcutaneous and injected into your belly fat). I expect to look like a pincushion after the next round, heh.

Finally, my parents have decided to rent an apartment in Seattle, which is really great. They'll still keep their house in Albuquerque, but they'll stay up here for the next 6-9 months to be near my sister and I. What's cool is that they managed to find a huge and really nice apartment less than a mile from our house, which is "coffee distance", meaning it's close enough to stop by for coffee in the morning or after work so we're really excited about that. It's great having family close by, and I can tell they're excited too.

That's it for now. The donor search process has officially started and has mainly involved correspondence with the search coordinator and filling out consent forms and dealing with insurance coverage. I expect that once we find a donor things could move pretty quickly, so we'll see how it goes.

Monday, July 14, 2008

Good news, platelets are at 48,000, up from 8,000 last Friday! This is the highest level we've seen since this whole thing began 6 weeks ago (on the first day my platelets were 31,000 - normal level is between 150,000 and 350,000). They're also higher than I thought they would be - I expected a boost of 22,000. So it's possible the extra 18,000 are from my own marrow as a result of the chemo, which would be great. We'll know on Wednesday when I do another blood test since platelet lifetime is 3-5 days, so the platelets from this transfusion should be dead by then (weird and kind of grim, huh).

The worry about transfusions is that your immune system might not enjoy another person's platelets running around your body, and could eat them all up. Luckily my immune system seems to have given a collective "ho hum" about the new platelets and let them merrily go along their way.

Friday, July 11, 2008

The platelet transfusion went fine - we'll check my counts again on Monday to see how well it worked. Quick refresher: platelets are those blood cells primarily responsible for clotting and are measured by the thousands per microlitre (uL) of blood (e.g. 140,000, or 140 for short).

For those interested in the transfusion details, I received 4 units of irradiated, leukocyte-reduced CMV-negative platelets that were collected by apheresis. This is probably more than you'll ever want to know about platelets, but here's what I found out about all that:

Unlike red blood cells, platelets can only be stored for a few days, so the blood bank is constantly in need of them.

Platelets can be extracted from whole blood donations, or they can be collected directly from the donor using apheresis. Apheresis is a process where just one blood component is extracted while the rest of the blood is circulated back to the donor. The benefit of apheresis is that someone can donate up to 2 units of platelets per donation this way, whereas it would take 4 full donations of whole blood to make 1 unit of platelets. A donor can also donate platelets up to twice a week compared with a whole blood donation in which they have to wait 3-4 months between donations.

A small number of white blood cells (those that fight infection) are always present in platelet donations. Normally the body's immune system immediately kills off these donor white blood cells, but for a person with a weakened immune system there is a small risk that these white blood cells could actually overpower the body's own immune system (called graft versus host disease). Irradiation is used to render these stray white cells ineffective. They don't go away, they just don't work anymore. So, platelets are almost always irradiated for patients suffering from low white blood counts.

Leukocyte-reduced means that the platelets were filtered even further to reduce any white blood cells present in the donation. Leukocyte comes from the greek words leukos (white) and kytos (cell).

Cytomegalovirus, or CMV, is a very common virus present in over half of the US population. After a CMV infection, the virus normally lies dormant and doesn't present a problem anymore. However, it can be reactivated in people with weakened immune systems and can pose serious problems. CMV-negative means that the platelets tested negative for this virus.

4 units of platelets were given for my transfusion. I found that during my marrow transplant, I'll need 120 units of platelets. Wow.

The threshold of thrombocytopenia (low platelets) when spontaneous bleeding might occur is a platelet count less than 5,000 - 10,000. I don't know why, but gruesome images from my favorite horror movies always pop into my head when I hear the term "spontaneous bleeding". Anyway, the recommended trigger is when it falls below 10,000. Mine was at 8,000, so my doctor consulted with the MDS specialist at the SCCA to confirm we should do a transfusion.

4 units of platelets for a 200 lb person should increase the counts by 22,000.

My platelets started at 30,000 a month ago and dropped to 8,000, so getting them back up to 30,000 would be great. The downside is that the survival of transfused platelets only lasts 3-5 days (they are mature cells and don't reproduce copies of themselves like blood stem cells), so it's possible they could be back down to what they are now by next week, but we'll be entering the recovery period of the chemo soon which means the levels should be coming back up.

I also found out that the Puget Sound Blood Center has this to say about platelet donations:

If I've joined the National Marrow Donor Program Registry, is there something I can do now to help marrow transplant patients?

Yes. Become a platelet donor. Platelet donors offer immediate support to patients with cancer, leukemia and others who may need a marrow or blood stem cell transplant.

So today started out great - I had a great cup of coffee and Focaccio breakfast sandwich with Johanna at Moka's this morning. It's a super relaxing little place near her work that we like to go to sometimes to indulge ourselves. Then I got a couple of errands done, checked out the iPhone line at the AT&T store (they were already sold out), and headed over to the doctor for what I hoped was some simple blood work. We finished it up after literally 30 seconds, so we happily walked over to Press to enjoy some bread and a nice steaming plate of clams. The weather was so nice, we were like yay! as we walked back through the Seattle University campus.

Then we got back to the office and my doctor said, "we gotta get you in for a transfusion today, your platelets are at 8, I'm really worried." Ugh. Normally they should be at 140 and mine started at 31 and have been dropping ever since. And even though it's not unexpected that they're going down (they should go down before they go back up), they're low enough that I run the risk of something bad happening over the weekend if we don't get some platelets in there. I don't mind so much about the transfusion itself, but the bummer is that each transfusion is less effective than the last, so we were hoping to be able to reserve them for when they were seriously needed. Well here we are I guess. So I have a transfusion at 3:30 this afternoon. It should only take a couple of hours, and the results of the transfusion should last about 2-3 days. Wish me luck :)

Wednesday, July 9, 2008

Good news - the treatment seems to be doing something. The platelet counts are up a little bit, but the neutrophil counts, those white blood cells most active in fighting infections, are at 1.5. Two weeks ago they were at 0.1, which is really, really low. Normal counts are between 2.0 and 8.0. Basically, at neutrophil counts less than 0.5, you're struggling with infections from your own bacteria. I've had a cold for the last month which is finally starting to dissipate, so it feels good :)

While my dad has been in town, we've found some time to go out riding on the scooters (I think he's getting hooked!). After some fun we had on an outing a couple of weeks ago, we decided yesterday to head off on another scooter adventure around town. What started off as a leisurely ride down to Seward Park ended up as a ride almost all the way around the lake (the big lake!). I've done this ride once before all the way around, but I got to ride it this time with my dad and my sister's fiance Brian (who also has a scooter), and it was a blast! We'd ride for a bit, then stop somewhere to kick back and relax, then would head back out for more fun. Zooming around town this way is the best.

Saturday, July 5, 2008

The other day I woke up super early and feeling pretty good, so I decided to get some couch-reading time in and started on a book that our friend Erika left for us when she came over the night before. It's the book about Lance Armstrong's well-known struggle with cancer and his impossible recovery. It's a great read and highly inspirational, and almost impossible to put down (I finished it the same night).

Thursday, July 3, 2008

And I pretty much feel like crap, heh. Actually it really hasn't been too bad. So far I haven't felt any of the really bad side-effects I was expecting, like severe nausea and vomiting (the anti-nausea drugs must be working), but a few other funny things have crept up over the last few days that make me feel weird. For example:

I'm really tired a lot (duh)

am having indigestion

have lost some sense of taste (like sweets, grr)

I've been tired some more

water tastes really weird (not as crisp)

the ends of my teeth are numb (chemo affects your gums)

coughing, shortness of breath, sore throat

irritable :)

Though I have re-discovered the joys of naps, which if you haven't taken any lately, you should. Naps are so nice in the evenings and afternoons and can so totally give you such positive energy during and after. Especially that feeling when you climb in bed and you kick off your shoes and socks, and the sheets feel so damn comfy-cozy. Then the feeling you have when you wake up after a 20-minute nap. Man that's the best.

So anyway, yesterday was my last day of chemo (round 1), and I should start to feel better in a few days. The next round will start in about 3 weeks and should last 5 days, and then we'll be doing chemo treatments once a month until the transplant happens. Btw, for those technically interested, there is a thing called a Nadir Point for Azacytadine which means that my blood counts will hit their lowest point about 10-17 days after the start of the chemo, then should increase by the 28th day. However, I *should* feel physically better in a few days, so we'll see how that goes.

Speaking of transplants, we found out this morning that neither my sister nor parents are a match for HLA typing (there was only a 1 in 3 chance of my sister being a match anyway), so now it's time to hit the anonymous donor database. I'll send more info on that tomorrow, but the short answer is that potential donors should sign up with the National Marrow Donor Program (http://marrow.org/). They'll send a little kit that you send back with a cheek swab, and then you're entered into the database. You can also visit the Puget Sound Blood Center to do the cheek swab locally.

Tuesday, July 1, 2008

Today is day 6 of my chemo treatment, which means after today I only have 1 day to go. I'm not sure how I feel about this. On one hand it's been nice to be on a regular schedule seeing the doctors since it gives me something to do every day and it feels like I'm making progress. On the other hand, once the treatment is done we'll need to see whether it was successful or not, and we'll probably start planning more about the upcoming transplant, so there's some anxiety there. I guess I'm just worried about the future.

The last couple of days I've also felt really fatigued, which was expected from the chemo. A friend of mine who went through chemotherapy for a tumor said he experienced the worst of it 2 days after the chemo stopped, so I guess I have more to look forward to :) Yesterday I spent most of the morning in bed, then after chemo took another nap in the evening. Though luckily I haven't felt any severe nausea or any other side effects they warned me about, so I feel pretty good about that.

Here are some pictures of some of the stuff I've been doing lately, chemo be damned :)

About Me

About this Blog

On June 5th, 2008 I was diagnosed with a blood disorder called Myelodysplastic Syndrome (MDS). What this means is that my bone marrow is unable to produce enough red blood cells, white blood cells or platelets. On January 27th, 2009 I had a bone marrow transplant, the only known option that offers a full chance of a cure.

I'm using this blog to help keep friends and family up to date, and also as a way for me to focus my thoughts and understand this disease so that I can power through it and beat it. Thanks to everyone for all the support. Your comments really cheer me up. I read them all!